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Biobanking across Europe post-GDPR : a deliberately fragmented landscape

Olga Tzortzatou, Santa Slokenberga, Jane Reichel, Andreia da Costa Andrade, Carla Barbosa, Sofie Bekaert (UGent) , Evert-Ben van Veen, Carlos M. Romeo-Casabona, Katharina Ó. Cathaoir, Gauthier Chassang, et al.
(2021) GDPR and biobanking : individual rights, public interest and research regulation across Europe. In Law, governance and technology series 43. p.397-419
Author
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Abstract
This chapter seeks to provide insight into the ways in which Member States leveraged the regulatory discretion afforded to them by the GDPR. Specifically, it reviews the biobank regulatory environment; whether and how derogations under Article 89(2) GDPR are enabled; the legal basis for scientific research and the role of consent in biobanking post-GDPR; the balance between individual rights and public interest in national law; and finally, the GDPR’s impact and future possibilities for biobanking. In exercising self-determination, Member States can, to a certain extent, align data protection requirements with their values and aspirations. Such alignment, though, could jeopardize collaborative research. In light of the need to bridge divergent legal and ethical requirements at a national and supranational level, the role of Research Ethics Committees (RECs) might prove to be essential.

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MLA
Tzortzatou, Olga, et al. “Biobanking across Europe Post-GDPR : A Deliberately Fragmented Landscape.” GDPR and Biobanking : Individual Rights, Public Interest and Research Regulation across Europe, edited by Santa Slokenberga et al., vol. 43, Springer, 2021, pp. 397–419, doi:10.1007/978-3-030-49388-2_22.
APA
Tzortzatou, O., Slokenberga, S., Reichel, J., da Costa Andrade, A., Barbosa, C., Bekaert, S., … Vella Falzon, R. (2021). Biobanking across Europe post-GDPR : a deliberately fragmented landscape. In S. Slokenberga, O. Tzortzatou, & J. Reichel (Eds.), GDPR and biobanking : individual rights, public interest and research regulation across Europe (Vol. 43, pp. 397–419). https://doi.org/10.1007/978-3-030-49388-2_22
Chicago author-date
Tzortzatou, Olga, Santa Slokenberga, Jane Reichel, Andreia da Costa Andrade, Carla Barbosa, Sofie Bekaert, Evert-Ben van Veen, et al. 2021. “Biobanking across Europe Post-GDPR : A Deliberately Fragmented Landscape.” In GDPR and Biobanking : Individual Rights, Public Interest and Research Regulation across Europe, edited by Santa Slokenberga, Olga Tzortzatou, and Jane Reichel, 43:397–419. Cham: Springer. https://doi.org/10.1007/978-3-030-49388-2_22.
Chicago author-date (all authors)
Tzortzatou, Olga, Santa Slokenberga, Jane Reichel, Andreia da Costa Andrade, Carla Barbosa, Sofie Bekaert, Evert-Ben van Veen, Carlos M. Romeo-Casabona, Katharina Ó. Cathaoir, Gauthier Chassang, Annelies Debucquoy, Jean-Jacques Derèze, Laurent Dollé, Sonja Eaker Fält, Radek Halouzka, Mette Hartlev, Michael Hisbergues, Nils Hoppe, Isabelle Huys, Els Kindt, Anne Kjersti Befring, Lukasz Kozera, Dorota Krekora-Zajac, Teodora Lalova, Michaela Mayrhofer, Anastassia Negrouk, Jakub Pawlikowski, Simone Penasa, Kärt Pormeister, Emmanuelle Rial-Sebbag, Anastasia Siapka, Tom Southerington, Magnus Stenbeck, Maja Šutalo, Marta Tomasi, Peggy Valcke, and Ruth Vella Falzon. 2021. “Biobanking across Europe Post-GDPR : A Deliberately Fragmented Landscape.” In GDPR and Biobanking : Individual Rights, Public Interest and Research Regulation across Europe, ed by. Santa Slokenberga, Olga Tzortzatou, and Jane Reichel, 43:397–419. Cham: Springer. doi:10.1007/978-3-030-49388-2_22.
Vancouver
1.
Tzortzatou O, Slokenberga S, Reichel J, da Costa Andrade A, Barbosa C, Bekaert S, et al. Biobanking across Europe post-GDPR : a deliberately fragmented landscape. In: Slokenberga S, Tzortzatou O, Reichel J, editors. GDPR and biobanking : individual rights, public interest and research regulation across Europe. Cham: Springer; 2021. p. 397–419.
IEEE
[1]
O. Tzortzatou et al., “Biobanking across Europe post-GDPR : a deliberately fragmented landscape,” in GDPR and biobanking : individual rights, public interest and research regulation across Europe, vol. 43, S. Slokenberga, O. Tzortzatou, and J. Reichel, Eds. Cham: Springer, 2021, pp. 397–419.
@incollection{8751033,
  abstract     = {{This chapter seeks to provide insight into the ways in which Member States leveraged the regulatory discretion afforded to them by the GDPR. Specifically, it reviews the biobank regulatory environment; whether and how derogations under Article 89(2) GDPR are enabled; the legal basis for scientific research and the role of consent in biobanking post-GDPR; the balance between individual rights and public interest in national law; and finally, the GDPR’s impact and future possibilities for biobanking. In exercising self-determination, Member States can, to a certain extent, align data protection requirements with their values and aspirations. Such alignment, though, could jeopardize collaborative research. In light of the need to bridge divergent legal and ethical requirements at a national and supranational level, the role of Research Ethics Committees (RECs) might prove to be essential.}},
  author       = {{Tzortzatou, Olga and Slokenberga, Santa and Reichel, Jane and da Costa Andrade, Andreia and Barbosa, Carla and Bekaert, Sofie and van Veen, Evert-Ben and Romeo-Casabona, Carlos M. and Cathaoir, Katharina Ó. and Chassang, Gauthier and Debucquoy, Annelies and Derèze, Jean-Jacques and Dollé, Laurent and Fält, Sonja Eaker and Halouzka, Radek and Hartlev, Mette and Hisbergues, Michael and Hoppe, Nils and Huys, Isabelle and Kindt, Els and Befring, Anne Kjersti and Kozera, Lukasz and Krekora-Zajac, Dorota and Lalova, Teodora and Mayrhofer, Michaela and Negrouk, Anastassia and Pawlikowski, Jakub and Penasa, Simone and Pormeister, Kärt and Rial-Sebbag, Emmanuelle and Siapka, Anastasia and Southerington, Tom and Stenbeck, Magnus and Šutalo, Maja and Tomasi, Marta and Valcke, Peggy and Vella Falzon, Ruth}},
  booktitle    = {{GDPR and biobanking : individual rights, public interest and research regulation across Europe}},
  editor       = {{Slokenberga, Santa and Tzortzatou, Olga and Reichel, Jane}},
  isbn         = {{9783030493875}},
  issn         = {{2352-1902}},
  language     = {{eng}},
  pages        = {{397--419}},
  publisher    = {{Springer}},
  series       = {{Law, governance and technology series}},
  title        = {{Biobanking across Europe post-GDPR : a deliberately fragmented landscape}},
  url          = {{http://doi.org/10.1007/978-3-030-49388-2_22}},
  volume       = {{43}},
  year         = {{2021}},
}
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